Dignifying Dementia (8 page)

During one of our visits, I had mentioned to the urologist my disappointment with the neurologist who had said, “Brain shrinkage.” Surely we could find someone with a more definitive diagnosis. So, in the hopes of getting more definitive answers, we arranged to see neurologist number two.

This time, instead of being asked to name presidents, Jim was asked to name as many animals as he could in 60 seconds. Jim named two and sat silent for another 10 or 15 seconds. Then the doctor said, “You have 40 seconds left”; at which point, Jim stood up, reached for my hand and said, “Thank you. We are leaving.”

Jim's abrupt desire to leave suggested that he was humiliated or embarrassed by the tests. How would we ever get any information? Our lives were filling with physicians, but we seemed no closer to answers.

When the treatment for the prostate cancer was completed, we headed north again. The 800-mile trip was uneventful.

In retrospect, I was the one with the mental deficiency, not Jim. While I could see that life needed to be less stressful for him, it never occurred to me to give up our snowbird lifestyle, that we needed one place, not two.

I did think about our summers, though, and about being closer to the Berkshires, which would be more peaceful for him than the hustle and bustle of New York City.

Having a place in the country, in a part of the world he loved, where he could still enjoy art, music and theatre would be less taxing. There he could see trees and hillsides and walk on a sidewalk at his own pace. I wasn't in denial. His cancer was in check. Why not the cognitive impairment?

While the location was pastoral, I didn't comprehend that his mind and body were being destroyed and how that deterioration would manifest itself. We had been given different labels and drugs to try – mostly for depression – but we had no guidance. I was used to doctors making recommendations the way the urologist had. Here's the problem, here's the treatment: rest in bed, take an aspirin, drink fluids, or take this antibiotic for 10 days. What did ‘brain shrinkage' mean? What did ‘lapses in memory' mean? What could we do about it? Watch the way he handles the checkbook? Try an antidepressant?

When I suggested moving to the Berkshires, Jim agreed grudgingly.

To make a long story short, in 1999 we bought a condo in Lenox and sold our
pied-à-terre
simultaneously. The market was good then, as was the timing. As I packed, Jim simply sat and watched. In the past, he had scolded me if I lifted something heavy or bulky and would promptly take it out of my hand. The man who packed us in two days to leave Ireland looked bewildered. Everything had fallen into place, except the illness.

Once we moved, I found a part-time job with the folks I had met when I was working with the conference group in the city. I felt a wave of sadness giving up New York City, but we had a gentler world for Jim. I guess I thought Jim would be mildly impaired forever, and my mission was to help him feel less stressed and more secure. I ignored my inner voice that said, “Hey, what about you?” Arrogantly, I thought that if I took care of him, he would be OK. He was just impaired, and, “If you're OK, I'm OK.” How naïve!

Not for the first time had I been that arrogant. I had a boss once with a steel-trap mind and a sharp tongue, who used to make us all quake in our shoes. A colleague had said, “She turns us all into gruel.” At the time, I told Jim how guilty I felt that my boss's husband had been diagnosed with a brain tumor. “I despise her,” I said. “Now look what has happened to her husband.” I thought I had wished evil on her. Jim turned to me and shook his head sadly, “Sweetie, don't flatter yourself! There was a long line ahead of you.” Now here I was thinking I could make a difference for Jim – ‘flattering myself' again.

Once ensconced in Lenox, we went to Tanglewood. At the rehearsals or concerts, Jim sat in his seat with his arms folded, hat pulled down over his face and acknowledged no one. I bought tickets for box seats for some concerts because I wanted Jim to have as much ‘special' as we could afford. It was the same reasoning that had prompted me to make a reservation at The Hotel Hershey rather than a Motel 8 or 10 on the trip south. I wanted the best for him. I wanted a chocolate on his pillow.

The truth was we still had no definitive information. Should we see another physician for another opinion? Would someone else have some insight? I thought we should, so we were referred to an osteopath. I explained to him that we had seen several doctors, and I told him about the “brain shrinkage,” the “90% sure Alzheimer's,” and the “memory lapses.” Once again, Jim was asked to perform; I recognized some questions from the previous tests. If he wasn't doing any better on the tests, I was. “Spell ‘world' backwards.” Jim missed it. But this physician did something different. He put his hands on Jim's arms and wrists and moved them up and down. At the end of his examination, he said, “You don't have Alzheimer's. You have Parkinson's! And it is too early in the illness to use any sort of medication.”

“However, for the depression,” he added, “I recommend that you see comedies instead of tragedies.” So now we had ‘memory lapses,' Alzheimer's and Parkinson's, and my thinking about writing a Dummies' book or preparing Cliff Notes on how to pass mini-mental status tests.

Jim didn't react to the diagnosis. I did. Believe it or not, I was elated when I heard Parkinson's. When we got in the car after leaving the osteopath's office, I was giddy. “Sweetie, what great news!” My heart soared. Jim seemed unmoved. I reassured him, “Lots of people have Parkinson's.” I rattled off: Hitler, Mohammed Ali, Janet Reno, and Michael J. Fox. “Sure the disease is a bloody nuisance, but it won't kill you.” I wasn't in denial. Once again, I didn't understand the implications, and I hadn't asked what they were.

A few days later, I woke up with a sharp pain in my side.
No!
I guessed what was wrong. Before heading north for the summer, my gynecologist had admonished me, “Your fibroid is so big, I am concerned that it is going to damage your kidney. You should have a hysterectomy.” I had said, “Jim's not well. I can't deal with this now. How about when we get back in the fall?” So I had a good idea what was causing the pain. Increasingly leery of physicians, I saw a local gynecologist who recommended surgery. He said, “The fibroid isn't the biggest I've ever seen.” Once again I was dismayed by a physician's communication skills. Was fibroid size a competition? In any event, the fibroid was pushing on my kidney; I needed a hysterectomy. Apparently it was surgery or kidney damage.

Once again I called Belinda, who found a physician in Cambridge. We went. He examined me. We talked. I argued against having the surgery; he parried my arguments. I was worried because I was concerned about Jim, and I knew I would be unable to drive or lift anything; I also was disappointed about giving up my part-time job. Meanwhile, I was aware that Jim was changing.

Regardless, we scheduled the surgery. Jim actually said to me, “Get it over with.” I booked a hotel room near the hospital and arranged for a limo for the roundtrip. A day before the surgery, we went to a Van Gogh exhibit at the Museum of Fine Arts. The morning of the surgery, Belinda and her daughter, Catrina, met us and chauffeured Jim to and from the hospital and made sure he ate. While he knew how to find his hotel room once inside the hotel, he could not take taxis or buses or get meals at restaurants on his own.

Did he understand I was having surgery? I wasn't sure. The morning of the surgery, he held my hand. But when I was discharged a couple of days later, barely able to walk or stand up straight, my darling husband said, “I'm bored.” I promised to go to the Fogg Museum, if he would wait until the next morning. The museum was a five-minute walk from the hotel – if you are healthy. I managed to walk at a snail's pace and climb up the steps. While Jim admired the art, I sat on a bench in the rotunda holding my belly, hoping that whatever was left inside wouldn't fall out. Was he aware of my discomfort? My normally loving, attentive husband no longer seemed concerned for me.

Before leaving for Boston, I had stocked our freezer full of frozen dinners, so once we were back home, all I had to do was walk from the freezer to the microwave; Jim no longer cooked. I tried to walk as much as possible and to be a role-model for ‘recovery.' When we returned to Boston for a follow-up visit, the gynecologist said, “The pathology report indicated that you had stage one endometrial cancer. You are very lucky, and you have been treated.” In essence, it was a good thing that I had the surgery when I did, and I was determined to show Jim that cancer was nothing. Did he understand? His own illness was depressing him. Was it the prostate cancer? Was he confused because he was depressed? Was he depressed because he was confused? We went to see another psychiatrist.

Jim called this doctor, “the Professor”, and he trusted him and saw him once a week throughout the summer. We walked to his office, where I would leave him while they talked “haltingly.” Once again, the Professor, like the other physicians, tried different medications to lift Jim's spirits – Wellbutrin and Dexadrine were two. I already had a shoebox filled with bottles of pills and samples. Nothing worked. Jim's reactions were dramatic and/or paradoxical.